Does anyone have any suggestions in how I can deal with sleep apnea? Looking likely that I have it, along with the PMR. . I’ve been referred to a sleep clinic but who knows how long that’ll take to be seen. That, along with the awful fatigue of PMR means I am totally exhausted and feel I can hardly function. Now working only three days a week but that, and the driving involved, is proving really difficult.
Sleep Apnea: Does anyone have any suggestions in... - PMRGCAuk
Sleep Apnea
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Spittal9
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I have to ask - are you fit to drive?
Have you gained a lot of pred-fat around your neck? That can contribute to sleep apnoea and sometimes a really disciplined low carb diet can deal with it to some extent. I bought Micahel Moseley's latest Keto offering the other day - was on offer for Kindle - and was reading it this morning. According to him it really goes for fat deposits which is what you would want.
I used to have strange breathing patterns with PMR, not apnoea and once I was on pred it improved a lot, but I did notice that the places I lost pred fat from first on low carb was around my midriff and neck/upper arms.
Honest answer to am I fit to drive, is I don’t know. I spoke to the nurse who has referred me to the sleep clinic and she seemed to think it was okay to drive. I filled in a sleep apnea questionnaire and got a moderate score for it. I don’t drive other than for work. I’m okay when I’m driving but by the time I get home I am really tired.
I did put weight on due to the pred but not much around my neck. Got the lovely moon face though. I have lost weight as I eat a lot less these days due to the fact I go to bed so early and miss out on meals quite often.
Might be of interest:
err.ersjournals.com/content...
Not to mention this:
Since your work requires you to drive - I trust the nurse made an urgent referral?
Thanks for the links. The referral was made at the end of January this year. Who knows how long I’ll have to wait to be seen!
Think if it were me, I'd poke the GP a bit.
I was referred to a new Rheumatologist last year as I had moved house and into a different health board area. It took a year to be seen! As I had spoken to my old Rheumatologist in February this year and the new appointment was in March, I phoned to ask if I really needed to go. I was told the referral was made last March and it would be better if I attended because if I cancelled I would go back to the bottom of the list and probably have to wait another year.
I was glad I did go as he was so lovely and understanding of PMR. He’s happy to let me go at my own pace with a slow taper and said whenever I get to 5mg I should go even slower.
Mmm - but the sleep clinics are a different kettle of fish. These might be worth investigating:
londonsleepcentre.com/getti....
sleepstation.org.uk/article...
I googled "can a GP refer to a sleep clinic in the UK" - and that gave me links to sleep clinics all over the place. My husband was head of a Medical Physics department - and they were heavily involved in the service. You don't always have to see a sleep specialist before the study is done - it may not be appropriate for your problem,
I’ll contact my GP and ask about the referral that has been put in. The Sleep Station link appears to deal primarily with insomnia. I don’t have an issue getting to sleep or staying asleep. I could sleep for Britain! I just need to keep breathing 😆
“just need to keep breathing “…
That’s probably a good idea 😳
Can I ask the title of the book please? Thanks
Fast 800 Keto
I have also just bought the book, although I missed the offer. There are some lovely recipes, which I’m really enjoying
DorsetLadyPMRGCAuk volunteer
Maybe try this forum -
healthunlocked.com/sleep-ma...
Thanks for this! I’ve joined and will go and have a look now.
I don’t have sleep apnea - but our family does have an issue with snoring…passed down from my mum and now onwards, or should that be downwards! I found mine was really bad when I was on high doses of Pred for GCA, but seems better (although not gone) now neck as returned to normal size and in remission.
My son does have a CPAP machine which he uses sometimes….
Apparently when I’m not stopping breathing I’m snoring loudly. Must be such a joy to live with 😴
My hubby used to wear earplugs when my snoring was bad! But never resorted to another room which one neighbour did when her hubby snored😳
We both wear ear plugs to block out each other’s snoring 😂
Even Stevens then! 🤣😂
When I put on a pred stone (14 lbs) I snored more and super loud. Now I snore much less and quieter too.
I have had obstructive sleep apnoea for 15 years, and PMR for the past year, so mine is not Pred. related. I was tired all the time, and the best thing I ever did was to get diagnosed and onto the therapy. Just to avoid a shock, you should know that if diagnosed you will not be able to drive until your consultant agrees that you are successfully managing the therapy.I assume that you are in the UK, so just to give you a picture, the following is likely to occur.
Obviously there will be a waiting list to see a consultant. Once diagnosed, you will have to surrender your driving licence because of the danger of you falling asleep behind the wheel. You will be provided with a Constant Positive Air Pressure (CPAP) machine. Unfortunately I had to wait a few months for one because of hospiral budgets!
Once using the CPAP machine you will find the tiredness will be so much better.
The machine makes a slight humm, and there is some noise of air exiting through vents in the mask. There are lots of different masks. I have a nasal one myself, but the key thing is to get it comfortably on your face. Don't make the restraint tight, the mask needs to almost float on your face, then you will find it comfortable.
It will take a few weeks to become accustomed to wearing the mask and the gentle noises. But persist with it, you will find it is well worth it.
The message is that life will be better once on a CPAP machine.
(One down side though, it's a bit of a passion killer 😂!)
Hi there, thanks for the advice. I had a feeling that might happen if I get a diagnosis. I suppose I put off going to my GP because of that but it got to the stage I had to do something. If I can’t drive I won’t be able to do my job, so that’s likely to have a major impact on me. I was diagnosed with PMR just under 3 years ago and the fatigue I’m feeling just now is off the scale.
Yes, after about 6 months on the CPAP, I saw the consultant again. He checked on my tiredness and the running hours indicated on the CPAP machine. If he is happy that you are successfully using the therapy he will inform the DVLA that you can have your licence back.I now use the CPAP machine without a second thought. But, I can't do without it, if I do, I will now wake up unable to breath - now that is frightening!
Glad you were able to get your license back again. Goodness knows when I’ll get to see a consultant but until then I reserve my energy for when I have to drive. I don’t do it if I don’t need to. Covid has been a blessing in that regard for me until now that things are getting back to some kind of normality.I don’t realise that I’m not breathing and wake up exhausted. I usually think I’ve slept all night with no problem. Not nice to listen to I’ve been told.
Is the CPAP machine a long term thing? How’s long have you been using it?
My father had it and had to get the thing you wear at night which solves the apnea I think. Good luck.
My husband has it, but it’s only confirmed by sleep clinic (well, that was the case 20 years ago). Waited months then for appointment, too. Can be other things. He had nose surgery first, but it didn’t work. Has had CPAP machine for 20 years, uses it every single night, travels with us round the world, it solves the problem. But you need to be tested first!! It’s easily solved & no snoring now. Be warned though, many think they have it, but don’t! My husband used to stop breathing quite often. The CPAP machine ‘deals with it’, if the sleep test proves it! But if you’re that tired you shouldn’t be driving…for your sake but also for the sake of others!! The child who darts out into the road & your reactions aren’t as fast as normal? It’s no big deal at all to have sleep apnoea, if it is it. Very simple to solve. But we did wait about a year, with nasal surgery, wait for test, wait for machine, oh & wait for funding…those problems don’t exist now, but they did at that time!! Some things have improved a lot now…then you had to drive a long way (90 miles for us) to get tested…now it’s an everyday occurrence! PS this is PMR & GCA forum, (don’t think there’s any link between those diseases & sleep apnoea), there are forums for sleep apnoea & Google has all the answers, too…I can only give you our experience & have no idea if you have it!!
I had a heart attack and subsequent cardiac arrest in October 2018 at age 62. During my hospital stay the medical staff noticed some sleep issues and my cardiologist sent me for an overnight evaluation at the sleep clinic. Result: moderate sleep apnea, severe if sleeping on my back. I was reluctant and very sceptical but my cardiologist was insistent that I use a CPAP machine. It made a huge difference! I really was not aware of how exhausted I was ALL the time.I developed PMR symptons in May 2020 with a diagnosis in late June - ESR was 89. Started on 20 mg Pred, currently at 6mg. Fatigue has definitely been a factor with PMR but not nearly as bad as before I using the CPAP machine.
I've been using the CPAP machine for 4 years and have been told it's long term. Can't sleep uninterrupted without it and I even travel with it. I have the nasal mask which is very comfortable. My husband is not bothered by the slight humming noise and it's NOT a passion killer.
Life is better alive than dead is our motto.
I was previously putting the fatigue down solely to the PMR but now realise it’s probably a combination of that and the possible sleep apnea. I’m glad to hear the CPAP machine has helped you.
Apart from going private where a machine will cost £400+ plus the consultation, I would get the referral to NHS. My husband's experience is that it does not take long due to the consequences if left untreated. We are in Hertfordshire and his is quite severe and hes had it for over 20 years. Spare parts to the machine are available on a telephone call (no appointment required) and the machine supplied is modern and quiet. Unfortunately this is not something you can do yourself as you need to have a sleep study to find out what setting the machine should be at. If in doubt or you want to know more about purchasing a machine privately, see the Resmed website resmed.com/en-us/ (American company but has an office over here. Good luck!
Sorry to hear you are waiting so long,I have had sleep apnoea since 2016.Make an appointment with your GP to ask for an appointment with your local hospital to have a CPAP machine.I would not be here if I had not been given a machine. Mine came from Harefield hospital in Middlesex. You can always apply to them directly and see if that helps,as I do not know your location another hospital maybe able to help you.You need to get it sorted asap. Hope this helps you.
Hi there, I’m in Ayrshire, Scotland. I’m going to chase up the sleep clinic referral today with my GP.
Seem to be quite a few sleep clinics in Scotland - including Dumfries and several in Glasgow
Hi, I was diagnosed with sleep apnea in 2009. You are probably similar, in that you have had s/ apnea for ages and haven't realised it.Once you are diagnosed you will find that the staff in the sleep unit are very helpful and even passionate in working with you. Jim
You’re probably right that I’ve had it a while. I also have polymyalgia rheumatica which causes fatigue. I need to take corticosteroids for the PMR and they also cause fatigue. So I think it’s been masked in amongst everything else.
sleep apnea needs diagnosis.I am not in the UK but can't your gp order the monitor...so easy to use ...does a recording of oxygen levels etc overnight. I live in Israel and a friend did it and found she had severe sleep apnea...now has a German device that she sleeps with that applies pressure during breathing and keeps oxygen levels up.
sleep apnea can be a serious condition and needs diagnosis asap....
having said that...life with PMR is endlessly exhausting...I also push on with work but I never feel anything but tired, very tired, extremely tired or deathly tired. Haven't felt awake for years...
My doctor has referred me to a sleep clinic. My understanding is that if I receive a diagnosis then I will be given a machine if needed.
PMR and working is hard. Was working full time but now only working three days. Would gladly give it up tomorrow if I could afford it. I feel at times my work is my life and is all I do. When I’m at home I’m too tired to do anything else.
Hi, I dont post very often on here as there are many people with much more experience of PMR than me. They are also better qualified to offer advice but on this matter I have a lot of experience. Having said that I have benefitted from the great advice given by our more learned members. I have PMR and a couple of years ago was diagnosed with severe sleep apnea. Apparently my score was very high. I was given a C P A P machine and also given a great peice of advice by the sleep clinic. I was told that at first I would hate the machine but if I persevered it would change from being my worst enemy to my best friend. How right he was. The machine logs how often you use the machine and for how many hours a night as well as other data. At first, as predicted, I hated it but after a while I realised that I couldn't sleep properly without it. The biggest problem was the adjustment of the mask. This is critical to get right and as someone has already commented its not "the tighter the better" but you will work it out. The information provided by the machine tells the sleep clinic how you are getting on with it and they pass the information to your GP I didn't have my license suspended as I wasn't tired during the day but I have realised just how much better I feel finally getting quality sleep. My wife is also very happy with me wearing it as from the moment I started using it I haven't snored once (apparently, I wouldn't know) I did put on quite a lot of weight when I started Predisolone but again, after reading all about carbs from the good people on here I am now steadily loosing it. Its a good job I don't post to often as there would be any room for anyone else. sorry for the long post but hopefully it may help someone in some small way. All the best Brian
Hi Brian, thanks for your response. I’m glad to hear the machine is helping you. I also put on weight with the prednisolone but have lost weight recently due to the fact I’ve not been eating properly because I’m so tired and I spend so long sleeping. Definitely not the best way to lose weight! I’m never too tired to eat chocolate though 😁
I had a sleep study recently and didn’t have to wait long for referral after my GP requested it. Upshot was that Apnoea was bad on my back but not too bad on my side. She concluded that I did not need a CPAP machine so would not lose my licence but I was to try retraining myself to sleep on my side. It could take 3 mths and then I may need to repeat training after about 1 year. How do you retrain yourself? I have a tennis ball on my back which seems to work! I don’t seem to be waking quite so much but it hasn’t yet solved the early morning waking completely. Early morning waking can also be due to insomnia for which CBT for insomnia is recommended. Then there are also individually moulded mouth guards to help with snoring but maybe you have already tried those. I couldn’t get on with them. Hope that helps.
Thanks for your reply. I’ve been told I do it more when I’m sleeping on my back and my snoring is worse in my back too apparently. I’ll give the tennis ball a try.
From US site-.
“Sleep Position
Snoring occurs more often when you are laying on your back, also called supine position. When you are on your back, gravity pulls the tissues surrounding your airway downward, which makes the airway more narrow. Research on snorers has shown that the frequency and intensity of snoring decreases in some patients when they lay on their side10, also called lateral position.
There are a variety of approaches to positional therapy to treat snoring and sleep apnea. Positional therapy11 encourages sleepers to avoid sleeping on their backs. These include positional alarms, modified nightshirts, and lateral sleep pillows. Data also suggests that using a special pillow designed to keep the head to the side can decrease snoring.”
I always thought I slept on my side as that is how I go to sleep and that seems to be how i I wake up. The birds nest effect on the back of my head tells me otherwise 😂
Yes it's surprising how much you actually move about when asleep!
PS to my last. Years ago my husband had soft palate surgery for snoring (a laser scar treatment which stiffened the soft palate around the scar) which helped a lot. However I’m not sure that they offer that now. I had a less drastic alternative, hot fine needles inserted across my soft palate but that didn’t work! Does anyone know of surgery being offered?
Depends on the underlying cause
I know how you feelI also have sleep apnea. I had a call within a few weeks to get a monitor over night. I then got a letter saying a machine would work for me so I collect it tomorrow. I also have fibromyalgia.
So like you the exhausted feeling is unbelievable. Luckily I have been my husbands carer until this all hit so I’m at home. Good luck with the testing hopefully you won’t have to wait too long 🥰
cpap machine. sleep clinics advise, test, set your machine up. but you can also set it on automatic where it adjusts itself to your needs. HOWEVER they are quite expensive and possibly not tax or medical deductible without doctor script. still you can buy them without a script on amazaon.
I have PMR and partner has Sleep Apnea. Please get appointment with GP then a Sleep Clinic. You can literally stop breathing when you are asleep with undiagnosed Sleep Apnea. 🙂🙏
I was referred to a sleep clinic nearly three months ago and I’m waiting on an appointment.
Re…maritime mags……u do stop breathing, which is why your brain wakes you up and as a consequence your sleep is constantly disturbed. u remain for the most part totally unaware, except for being tired but this is very bad for your heart.
i have moderate sleep apnea.I was given a cpap machine,where the clinic could monitor my progress.I lost 4.7stone on keto,and my apneas decreased from 20 per hour down to 5!However,since 2years on pred for gca,i gained the weight back.I now have aprox 8-12 per hr…im now off the pred🥳so i will do keto again…It helps with so many illnesses,but not with pmr 😩im not going back to pred😎
Keto helps with the pred-associated weight gain too - while you are still on pred.
But I wouldn't vow to never go back to pred. There are worse things - like untreated PMR.
I have sleep apnoea. I was diagnosed in Dec 2019 and fortunately got my CPAP machine on 6th Feb 2020 (UK). Best thing I ever did was persist with the therapy as I feel 1000 percent better and feel like I have my mind back. Can't really say the same about my body as I'm disabled but being alert and happy makes a big difference.
I have been tapering from Prednisone for the past year. I suffered a stroke in Oct 22 and was diagnosed with sleep apnea. A home sleep study indicated I was having around 48 events per hour, with both central sleep apnea and obstructive sleep apnea. I made an appt with a sleep specialist. He verified the sleep study and ordered a Bi-level machine for me. I suggest you make an appt with a sleep specialist to manage your apnea. You will begin to feel so much better.
Thanks for this! I was referred to a sleep clinic in February 2022. I got a call months ago from them saying they don’t know when I’ll be seen as they are running a year behind with appointments!
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